Search

Additional file 1.

This report describes the results of consumer/researcher forums held in 2020 in Melbourne Australia about optimising consumer engagement in living diabetes guidelines. A proposed model of living engagement is also outlined. Partnership project between Centre for Health Communication and Participation and the Australian Living Evidence Consortium.

This scoping review aims to map the available evidence on the epidemiology of NCDs and their risk factors in pregnant women, women giving birth, and postpartum women in LMICs. Findings from this review will also identify gaps in literature and enable recommendations for future research.

The aim of this project is to conduct a scoping review to collate and map all randomised controlled trials that have been conducted in maternal health in low- and middle-income countries over the ten-year period from 2010-2019. This set of trials could then be mapped against both the global burden of maternal mortality, and previously identified research priority areas. Ultimately this could be used to identify important gaps within maternal health research and set the direction for future research programs.

To date, 18 living recommendations for the clinical care of pregnant and postpartum women with COVID-19 have been issued by the National COVID-19 Clinical Evidence Taskforce. This includes recommendations on mode of birth, delayed umbilical cord clamping, skin-to-skin contact, breastfeeding, rooming-in, antenatal corticosteroids, angiotensin-converting enzyme inhibitors, disease-modifying treatments (including dexamethasone, remdesivir and hydroxychloroquine), venous thromboembolism prophylaxis and advanced respiratory support interventions (prone positioning and extracorporeal membrane oxygenation). Through continuous evidence surveillance, these living recommendations are updated in near real-time to ensure clinicians in Australia have reliable, evidence-based guidelines for clinical decision-making. Please visit https://covid19evidence.net.au/ for the latest recommendation updates.

Additional file 4: Table 1. Websites of organizations, societies, associations, and colleges identified for searching of relevant guidelines.

Additional file 1: Table 1. PRISMA scoping review reporting checklist.

Additional file 1. Supplementary methods and data for “Using the WHO-INTEGRATE evidence-to-decision framework in the development of induction of labour recommendations”. Detailed evidence review findings, 2. Search strategies, 3. Qualitative evidence eligibility and quality assessment, 4. Qualitative evidence selection, 5. Cost and cost-effectiveness evidence, 6. EtD framework mapping, 7. Characteristics of included qualitative studies, 8. Participant characteristics in included qualitative studies, 9. References.

Additional file 2: Table 1. Non-communicable disease categories for analysis and selected high-priority conditions.

Additional file 3. Search strategy. Table 1. Search strategy for PubMed. Table 2. Search strategy for Global Index Medicus. Table 3. Search strategy for TRIP database.

Additional file 6. Scope of recommendations for high priority conditions. Table 1. Gestational diabetes mellitus (GDM). Table 2. Diabetes mellitus (pre-existing). Table 3. Chronic hypertension. Table 4. Asthma. Table 5. Sickle cell disorder. Table 6. General mental disorders, bipolar disorder, psychotic disorders. Table 7. Depression and anxiety. Table 8. Substance use disorders. Table 9. Tobacco use. Table 10. Alcohol use disorder.

This report describes the results of consumer/researcher forums held in 2020 in Melbourne Australia about optimising consumer engagement in living diabetes guidelines. A proposed model of living engagement is also outlined. Partnership project between Centre for Health Communication and Participation and the Australian Living Evidence Consortium.

OBJECTIVES: Respiratory failure, multiple organ failure, shortness of breath, recovery, and mortality have been identified as critically important core outcomes by more than 9300 patients, health professionals, and the public from 111 countries in the global coronavirus disease 2019 core outcome set initiative. The aim of this project was to establish the core outcome measures for these domains for trials in coronavirus disease 2019. DESIGN: Three online consensus workshops were convened to establish outcome measures for the four core domains of respiratory failure, multiple organ failure, shortness of breath, and recovery. SETTING: International. PATIENTS: About 130 participants (patients, public, and health professionals) from 17 countries attended the three workshops. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Respiratory failure, assessed by the need for respiratory support based on the World Health Organization Clinical Progression Scale, was considered pragmatic, objective, and with broad applicability to various clinical scenarios. The Sequential Organ Failure Assessment was recommended for multiple organ failure, because it was routinely used in trials and clinical care, well validated, and feasible. The Modified Medical Research Council measure for shortness of breath, with minor adaptations (recall period of 24 hr to capture daily fluctuations and inclusion of activities to ensure relevance and to capture the extreme severity of shortness of breath in people with coronavirus disease 2019), was regarded as fit for purpose for this indication. The recovery measure was developed de novo and defined as the absence of symptoms, resumption of usual daily activities, and return to the previous state of health prior to the illness, using a 5-point Likert scale, and was endorsed. CONCLUSIONS: The coronavirus disease 2019 core outcome set recommended core outcome measures have content validity and are considered the most feasible and acceptable among existing measures. Implementation of the core outcome measures in trials in coronavirus disease 2019 will ensure consistency and relevance of the evidence to inform decision-making and care of patients with coronavirus disease 2019.

OBJECTIVES: The outcomes reported in trials in coronavirus disease 2019 are extremely heterogeneous and of uncertain patient relevance, limiting their applicability for clinical decision-making. The aim of this workshop was to establish a core outcomes set for trials in people with suspected or confirmed coronavirus disease 2019. DESIGN: Four international online multistakeholder consensus workshops were convened to discuss proposed core outcomes for trials in people with suspected or confirmed coronavirus disease 2019, informed by a survey involving 9,289 respondents from 111 countries. The transcripts were analyzed thematically. The workshop recommendations were used to finalize the core outcomes set. SETTING: International. SUBJECTS: Adults 18 years old and over with confirmed or suspected coronavirus disease 2019, their family members, members of the general public and health professionals (including clinicians, policy makers, regulators, funders, researchers). INTERVENTIONS: None. MEASUREMENTS: None. MAIN RESULTS: Six themes were identified. "Responding to the critical and acute health crisis" reflected the immediate focus on saving lives and preventing life-threatening complications that underpinned the high prioritization of mortality, respiratory failure, and multiple organ failure. "Capturing different settings of care" highlighted the need to minimize the burden on hospitals and to acknowledge outcomes in community settings. "Encompassing the full trajectory and severity of disease" was addressing longer term impacts and the full spectrum of illness (e.g. shortness of breath and recovery). "Distinguishing overlap, correlation and collinearity" meant recognizing that symptoms such as shortness of breath had distinct value and minimizing overlap (e.g. lung function and pneumonia were on the continuum toward respiratory failure). "Recognizing adverse events" refers to the potential harms of new and evolving interventions. "Being cognizant of family and psychosocial wellbeing" reflected the pervasive impacts of coronavirus disease 2019. CONCLUSIONS: Mortality, respiratory failure, multiple organ failure, shortness of breath, and recovery are critically important outcomes to be consistently reported in coronavirus disease 2019 trials.

OBJECTIVES: There are over 4,000 trials conducted in people with coronavirus disease 2019. However, the variability of outcomes and the omission of patient-centered outcomes may diminish the impact of these trials on decision-making. The aim of this study was to generate a consensus-based, prioritized list of outcomes for coronavirus disease 2019 trials. DESIGN: In an online survey conducted in English, Chinese, Italian, Portuguese, and Spanish languages, adults with coronavirus disease 2019, their family members, health professionals, and the general public rated the importance of outcomes using a 9-point Likert scale (7-9, critical importance) and completed a Best-Worst Scale to estimate relative importance. Participant comments were analyzed thematically. SETTING: International. SUBJECTS: Adults 18 years old and over with confirmed or suspected coronavirus disease 2019, their family members, members of the general public, and health professionals (including clinicians, policy makers, regulators, funders, and researchers). INTERVENTIONS: None. MEASUREMENTS: None. MAIN RESULTS: In total, 9,289 participants from 111 countries (776 people with coronavirus disease 2019 or family members, 4,882 health professionals, and 3,631 members of the public) completed the survey. The four outcomes of highest priority for all three groups were: mortality, respiratory failure, pneumonia, and organ failure. Lung function, lung scarring, sepsis, shortness of breath, and oxygen level in the blood were common to the top 10 outcomes across all three groups (mean > 7.5, median ≥ 8, and > 70% of respondents rated the outcome as critically important). Patients/family members rated fatigue, anxiety, chest pain, muscle pain, gastrointestinal problems, and cardiovascular disease higher than health professionals. Four themes underpinned prioritization: fear of life-threatening, debilitating, and permanent consequences; addressing knowledge gaps; enabling preparedness and planning; and tolerable or infrequent outcomes. CONCLUSIONS: Life-threatening respiratory and other organ outcomes were consistently highly prioritized by all stakeholder groups. Patients/family members gave higher priority to many patient-reported outcomes compared with health professionals.

There is a gap between health research and health care, a substantial difference between what we know works and what we do in practice. As a result each year there are millions of avoidable deaths, innumerable avoidable episodes of illness and huge waste of resources. This ‘know-do gap’ is global, independent of setting and speciality. Closing the gap is a particular priority in three areas: in crisis settings where the level of resourcing is lowest, in low and middle income countries (LMICs) where the burden of disease is greatest, and in hospitals, the health sector which receives the largest proportion of healthcare funding. This thesis consists of a series of studies investigating the use of research summaries and clinical practice guidelines (CPGs) as knowledge translation tools to bridge the gap in these crucial settings. The studies examine the value and effectiveness of these tools and identify the factors that limit their impact, with the aim of enabling more effective strategies to translate research into practice in these settings. The studies in this thesis employ a range of methods and include an evaluation of research summaries for crisis settings called ‘Evidence Aid’, an examination of the methods for developing evidence-based CPGs, an investigation of the research used to develop current CPGs for crisis settings, an exploration of the barriers to evidence-based CPG development in eleven hospitals in South East Asia and Australia and development of a potential method to overcome these barriers. The results of these studies demonstrate that healthcare decision-makers in crisis settings, LMICs and hospitals are aware of the ‘know-do gap’ and they value tools aiming to address it, such as research summaries and CPGs. However, the studies also identify multiple, substantial barriers that mean these tools are not effectively bridging the gap between research and clinical practice in the settings examined in this thesis. These barriers can be broadly categorised as limitations in relevance of research, resources and relationships between researchers and healthcare decision-makers. There is a deficit of research which has been conducted in, or is relevant to the settings investigated in this thesis. When potentially relevant research is available, adequate description of the context in which the research was undertaken is rarely provided, either in the original research or in subsequent summaries, so relevance is difficult to assess. The limited resources in crises, LMICs and hospitals lead to major impediments to use of research to guide practice. These include lack of time, lack of skills and lack of information technology infrastructure. Lack of relationships between researchers, research synthesisers and healthcare decision-makers is another major barrier. This is both a barrier to identifying what research is needed in knowledge translation tools and a barrier to getting these tools used. By identifying and exploring these barriers, the results of this research will support development of more effective strategies to overcome the ‘know-do gap’ in crisis, LMIC and hospital settings. The pragmatic CPG developmental model presented in this thesis is one such strategy which is tailored to the needs of these settings. Strategies such as this have the potential to improve clinical practice and resource use and, ultimately, better prevent and treat illness and save lives.

Systematic reviews are difficult to keep up to date, but failure to do so leads to a decay in review currency, accuracy, and utility. We are developing a novel approach to systematic review updating termed "Living systematic review" (LSR): systematic reviews that are continually updated, incorporating relevant new evidence as it becomes available. LSRs may be particularly important in fields where research evidence is emerging rapidly, current evidence is uncertain, and new research may change policy or practice decisions. We hypothesize that a continual approach to updating will achieve greater currency and validity, and increase the benefits to end users, with feasible resource requirements over time.

Objective: The outcomes reported in trials in COVID-19 are extremely heterogeneous and of uncertain patient relevance, limiting their applicability for clinical decision-making. The aim of this workshop was to establish a core outcomes set for trials in people with suspected or confirmed COVID-19. Design: Four international online multi-stakeholder consensus workshops were convened to discuss proposed core outcomes for trials in people with suspected or confirmed COVID-19, informed by a survey involving 9289 respondents from 111 countries. The transcripts were analyzed thematically. The workshop recommendations were used to finalize the core outcomes set Setting: International Participants: Adults aged 18 years and over with confirmed or suspected COVID-19, their family members, members of the general public and health professionals (including clinicians, policy makers, regulators, funders, researchers). Main Results: Six themes were identified. Responding to the critical and acute health crisis reflected the immediate focus on saving lives and preventing life-threatening complications that underpinned the high prioritization of mortality, respiratory failure, and multiorgan failure. Capturing different settings of care highlighted the need to minimize the burden on hospitals and to acknowledge outcomes in community settings. Encompassing the full trajectory and severity of disease was addressing longer-term impacts and the full spectrum of illness (e.g. shortness of breath and recovery). Distinguishing overlap, correlation and collinearity meant recognizing that symptoms such as shortness of breath had distinct value, and minimizing overlap (e.g. lung function and pneumonia were on the continuum toward respiratory failure). Recognizing adverse events refers to the potential harms of new and evolving interventions. Being cognizant of family and psychosocial wellbeing reflected the pervasive impacts of COVID-19. Conclusions: Mortality, respiratory failure, multiorgan failure, shortness of breath, and recovery are critically important outcomes to be consistently reported in COVID-19 trials., The project is funded by the Flinders University and the National COVID-19 Clinical Evidence Taskforce, convened by the Australian Living Evidence Consortium, hosted by Cochrane Australia, School of Public Health and Preventive Medicine, Monash University supported by the Australian Government, Victorian Department of Health and Human Services, Ian Potter Foundation, Walter Cottman Endowment Fund (managed by Equity Trustees) and the Lord Mayor's Charitable Foundation). AT is supported by The University of Sydney Robinson Fellowship. ACM is supported by a Clinical Research Career Development Fellowship from the Wellcome Trust (WT 2055214/Z/16/Z)

Background “Living guidelines” are guidelines which are continually kept up to date as new evidence emerges. Living guideline methods are evolving. The aim of this study was to determine how frequently searches for new evidence should be undertaken for the Australian Living Stroke Guidelines. Methods Members of the Living Stroke Guidelines Development Group were invited to complete an online survey. Participants nominated one or more recommendation topics from the Living Stroke Guidelines with which they had been involved and answered questions about that topic, assessing whether it met criteria for living evidence synthesis, and how frequently searches for new evidence should be undertaken and why. For each topic we also determined how many studies had been assessed and included, and whether recommendations had been changed. Results Fifty-seven assessments were received from 33 respondents, covering half of the 88 guideline topic areas. Nearly all assessments (49, 86%) were that the continual updating process should be maintained. Only three assessments (5%) deemed that searches should be conducted monthly; 3-monthly (14, 25%), 6-monthly (13, 23%) and yearly (17, 30%) searches were far more frequently recommended. Rarely (9, 16%) were topics deemed to meet all three criteria for living review. The vast majority of assessments (45, 79%) deemed the topic a priority for decision-making. Nearly half indicated that there was uncertainty in the available evidence or that new evidence was likely to be available soon. Since 2017, all but four of the assessed topic areas have had additional studies included in the evidence summary. For eight topics, there have been changes in recommendations, and revisions are underway for an additional six topics. Clinical importance was the most common reason given for why continual evidence surveillance should be undertaken. Workload for reviewers was a concern, particularly for topics where there is a steady flow of publication of small trials. Conclusions Our study found that participants felt that the vast majority of topics assessed in the Living Stroke Guidelines should be continually updated. However, only a fifth of topic areas were assessed as conclusively meeting all three criteria for living review, and the definition of “continual” differed widely. This work has informed decisions about search frequency for the Living Stroke Guidelines and form the basis of further research on methods for frequent updating of guidelines.

Background Effective use of research to inform policymaking can be strengthened by policymakers undertaking various research engagement actions (e.g., accessing, appraising, and applying research). Consequently, we developed a thorough measurement and scoring tool to assess whether and how policymakers undertook research engagement actions in the development of a policy document. This scoring tool breaks down each research engagement action into its key ‘subactions’ like a checklist. The primary aim was to develop the scoring tool further so that it assigned appropriate scores to each subaction based on its effectiveness for achieving evidence-informed policymaking. To establish the relative effectiveness of these subactions, we conducted a conjoint analysis, which was used to elicit the opinions and preferences of knowledge translation experts. Method Fifty-four knowledge translation experts were recruited to undertake six choice surveys. Respondents were exposed to combinations of research engagement subactions called ‘profiles’, and rated on a 1–9 scale whether each profile represented a limited (1–3), moderate (4–6), or extensive (7–9) example of each research engagement action. Generalised estimating equations were used to analyse respondents’ choice data, where a utility coefficient was calculated for each subaction. A large utility coefficient indicates that a subaction was influential in guiding experts’ ratings of extensive engagement with research. Results The calculated utilities were used as the points assigned to the subactions in the scoring system. The following subactions yielded the largest utilities and were regarded as the most important components of engaging with research: searching academic literature databases, obtaining systematic reviews and peer-reviewed research, appraising relevance by verifying its applicability to the policy context, appraising quality by evaluating the validity of the method and conclusions, engaging in thorough collaborations with researchers, and undertaking formal research projects to inform the policy in question. Conclusions We have generated an empirically-derived and context-sensitive method of measuring and scoring the extent to which policymakers engaged with research to inform policy development. The scoring system can be used by organisations to quantify staff research engagement actions and thus provide them with insights into what types of training, systems, and tools might improve their staff’s research use capacity. Electronic supplementary material The online version of this article (doi:10.1186/s12961-015-0013-z) contains supplementary material, which is available to authorized users.

Background Evidence-informed policymaking is more likely if organisations have cultures that promote research use and invest in resources that facilitate staff engagement with research. Measures of organisations’ research use culture and capacity are needed to assess current capacity, identify opportunities for improvement, and examine the impact of capacity-building interventions. The aim of the current study was to develop a comprehensive system to measure and score organisations’ capacity to engage with and use research in policymaking, which we entitled ORACLe (Organisational Research Access, Culture, and Leadership). Method We used a multifaceted approach to develop ORACLe. Firstly, we reviewed the available literature to identify key domains of organisational tools and systems that may facilitate research use by staff. We interviewed senior health policymakers to verify the relevance and applicability of these domains. This information was used to generate an interview schedule that focused on seven key domains of organisational capacity. The interview was pilot-tested within four Australian policy agencies. A discrete choice experiment (DCE) was then undertaken using an expert sample to establish the relative importance of these domains. This data was used to produce a scoring system for ORACLe. Results The ORACLe interview was developed, comprised of 23 questions addressing seven domains of organisational capacity and tools that support research use, including (1) documented processes for policymaking; (2) leadership training; (3) staff training; (4) research resources (e.g. database access); and systems to (5) generate new research, (6) undertake evaluations, and (7) strengthen relationships with researchers. From the DCE data, a conditional logit model was estimated to calculate total scores that took into account the relative importance of the seven domains. The model indicated that our expert sample placed the greatest importance on domains (2), (3) and (4). Conclusion We utilised qualitative and quantitative methods to develop a system to assess and score organisations’ capacity to engage with and apply research to policy. Our measure assesses a broad range of capacity domains and identifies the relative importance of these capacities. ORACLe data can be used by organisations keen to increase their use of evidence to identify areas for further development. Electronic supplementary material The online version of this article (doi:10.1186/s12961-015-0069-9) contains supplementary material, which is available to authorized users.

Background The importance of utilising the best available research evidence in the development of health policies, services, and programs is increasingly recognised, yet few standardised systems for quantifying policymakers’ research use are available. We developed a comprehensive measurement and scoring tool that assesses four domains of research use (i.e. instrumental, conceptual, tactical, and imposed). The scoring tool breaks down each domain into its key subactions like a checklist. Our aim was to develop a tool that assigned appropriate scores to each subaction based on its relative importance to undertaking evidence-informed health policymaking. In order to establish the relative importance of each research use subaction and generate this scoring system, we conducted conjoint analysis with a sample of knowledge translation experts. Methods Fifty-four experts were recruited to undertake four choice surveys. Respondents were shown combinations of research use subactions called profiles, and rated on a 1 to 9 scale whether each profile represented a limited (1–3), moderate (4–6), or extensive (7–9) example of research use. Generalised Estimating Equations were used to analyse respondents’ choice data, which calculated a utility coefficient for each subaction. A large utility coefficient indicated that a subaction was particularly influential in guiding experts’ ratings of extensive research use. Results Utility coefficients were calculated for each subaction, which became the points assigned to the subactions in the scoring system. The following subactions yielded the largest utilities and were regarded as the most important components of each research use domain: using research to directly influence the core of the policy decision; using research to inform alternative perspectives to deal with the policy issue; using research to persuade targeted stakeholders to support a predetermined decision; and using research because it was a mandated requirement by the policymaker’s organisation. Conclusions We have generated an empirically derived and context-sensitive means of measuring and scoring the extent to which policymakers used research to inform the development of a policy document. The scoring system can be used by organisations to not only quantify the extent of their research use, but also to provide them with insights into potential strategies to improve subsequent research use. Electronic supplementary material The online version of this article (doi:10.1186/s12961-015-0022-y) contains supplementary material, which is available to authorized users.